Some people seem to think that if you are interested in DIY Diabetes you must be looping.

This is not the truth. At all. In fact, a lot of people who are really interested in the whole movement have made a very conscious and well-informed decision to not DIY themselves. There are a multitude of reasons for this, but they can all be filed under the banner of ‘My Diabetes; My Rules’.

(Let’s get out of the way the critically important point that for most people, the concept of DIYAPS is not even an option. When struggling to access the most basic of diabetes technology and drugs, the very idea of building a DIY system to automate insulin delivery does not even figure into one’s diabetes management plans. However, I am talking about people who are fortunate to have the choice to loop or not to loop, and choose not to.)

Last week, I was invited by the Danish Diabetes Academy to speak at an event they were running about the Diabetes Do It Yourself movement. I’d been asked to speak about how and why Diabetes Australia had become the first consumer/patient organisation to develop and launch a position statement on DIY technology solutions. More on that another time.

The day opened with a presentation from Bastian Hauck, and he could not have set the scene better. To start with, he challenged everyone’s idea of just what technology is. He showed his brand of tech: a reusable insulin pen, a glucose meter, and an explanation that he usually uses CGM with it. No pump. No automation. No integrated system. No DIYAPS.

Does this make him a luddite or anti-tech? Does this mean that he has no interest in or idea of DIYAPS, or that he is suspicious and opposes it? Of course not. It simply means that at this point in time, he has worked out what works best for him and his diabetes, and that’s what he is using. Sounds pretty sensible to me.

Bastian also drew everyone’s attention to the point I made in the first paragraph of this post: pens (or syringes) and a BGL meter are what the vast, vast majority of people are using to manage their diabetes. The people in the room and those involved in DIY tech are a minority. A very privileged minority. And we must never forget that.

I actually think it’s great when we have people actively involved in the #WeAreNotWaiting world using a variety of management solutions because it means we don’t get caught up only hearing the perspectives and opinions of those who are looping. We can be an evangelical lot, and remembering that there are others doing perfectly well (and are perfectly happy) doing what they have been doing is important.

What we don’t need is people who really don’t understand the systems claiming the reasons they steer clear is because DIY systems are unregulated and therefore unsafe, or other motives that are pretty damn inaccurate. No one needs to justify why they have or have not adopted certain diabetes management options, but it would be good if they didn’t point to reasons that are not especially truthful, perpetuating claims that only serve to scare people. (And anyone who is using this last weekend’s FDA warning about DIY systems to claim that their concerns are warranted should read this post from Katie DiSimone for some context.)

For every Dana Lewis (who gave an overview of her own story, and a typically brilliant explanation of just what OpenAPS is and how it came about) there are others who simply are not interested. And that is perfectly fine!

One thing that both Bastian and Dana reminded everyone is this: ALL diabetes is DIY. It is 24/7 and we do it ourselves for day to day. Call it what you want – DIY or off-label diabetes – it’s just diabetes. And we have no choice other than doing it ourselves.

Bastian and Dana

 

DISCLOSURE

The Danish Diabetes Academy invited me to speak at the Diabetes – Do It Yourself conference in Copenhagen. They covered by (premium economy) flight home from Copenhagen and three nights’ accommodation and expenses.

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